I am inpatient at something and I don’t know what it is. But it’s understandable, this the biggest job I’ve ever done. It means so much to me. My husband and I can finally live and not survive on supplemental welfare of whatever my body decides to give me. Don’t get me wrong I appreciate the canned hope I get every now and then. But just maybe, just maybe if I succeed at this last job, I can be released from these chained tubes that straddle my veins feeding me traces of electrolytes here and there.
This time I will have the best of the best on my team Boss lady (Minimally Invasion Surgery GYN), Sleeper ( the head of anestheiology), Gatekeeper (intensivist), Madame Modulator (Immunologist), we call him muscles (Rheumatologist), The Controller (Neurologist), The preserver (Hematologist), The Traveller ( PTSD Therapist), and that one is 6 Speed (Cardiologist)
Let me tell you how I became a con artist. It began approximately 10 years ago. I started experiencing fatigue like non other. I woke up more tired than I did before going to bed. My muscles did not respond to brain to get up & move. I was achy, having panic attacks. My menses was progressively debilitating. The pain was so bad at one point, I had to rock on the floor of the car as my husband was driving. A friend who was with us exclaimed, ” you look like you are going into labor”. My favorite season summer felt like it was betraying me. Hot became too hot for me, unbearable. And my face betrayed my hidden discomfort. The slightest exposure, I would have severe symptoms of heat stroke. Then I had walking pneumonia. This wasn’t me.
I was a workout junkie, I went through Jillian Michael’s workout videos as if it was a personal challenge, I enjoyed being dynamic, and trying to keep up with my husband’s endless energy. Honestly by 9pm, he would barely finish turning off the lights and I was instantly in a deep sleep. I had 3 half-marathons under my belt. I knew something had to be wrong.
I asked my then primary care physician to refer me to a rheumatologist. Appointment day came, I went alone. After much anxiety, (I don’t like parking in decks). I went into the office, it was cold, flat and uninviting. The wood paneled walls reminded me of the homes of my elderly patients. Except this office did not have the ubiquitous musk of grandma’s home. No I did not feel the warm comfort of memories that hung trapped in humid air, holding good times & bad times yet refreshingly familiar. The air was thin, drafty and indifferent. There was no receptionist. I could almost hear the walls greet me matter of factly in a monotone monolog that would have been said had a receptionist been there. It wasn’t the type of doctors office I expected in prestigious Princeton, marked up to be the most desirable places of the century. Dr. Patel invites me into the examination room.
She asked questions, I answered.
She examined me; I sat still only moved when prompted by her.
No small talk, she writes an order for lab work. I anxiously book the appointment to have my blood drawn. Tube, after tube, all the labs were drawn. Dr. Patel was thorough, she knew her stuff.
Then the results came back. I knew I had this one in the bag, there is no way something wasn’t wrong. To my disappointment, all the results were normal. I was handed a diagnosis of Fibromyalgia in one hand & samples Lyrica in the other hand. I was quite upset, I failed this job. My blood work betrayed me, I was not sick. I was conning for attention, and there it is on paper it’s all in my head.
I returned to normal life, having failed to get a diagnosis more than Fibromyalgia. So I had no excuse to be tired, to be in pain & to think I couldn’t breathe. There wasn’t any validation to take it easy on myself, rest when I’m tired, cry when my pain became overwhelming. So I got back out there, to the real world. I pushed myself just as hard, even harder to prove to myself that what the lab results said was true.
“There ain’t nothing wrong with you girl” echoed in my mind relentlessly.
I tried conning all of them. The Gastroenterologist, Neurological, Gynecologist, Endocrinologist, Hepatologist, Immunologist. Each one I failed miserably. There would be easy pass for me, no validation to be kind to myself. No, not for me. The contant pressure to be a “productive” member of society is reminiscent of the factories that line the Turnpike, spewing out smoke in a rhythmic groan, pudhing and grinding without rest.
While we wouldn’t expect The White Coats to perpetuate this oppressive standard, SOME do So. In some ways I felt they took a paternalistic view towards their patients, invalidating our pleas for help as an excuse to stop working. What hasn’t been said to me?
You are too young to be that sick, that’s a rare disease you couldn’t possibly have that condition, you just had a baby you need more sleep, I think you will get along better with my colleague she is African American, you need to find someone to talk to about the stress in your life, you need to think positively, you should join a local group of runners and form friendships in your community, you need to stop blaming your kids for your problems, you should thank God you were able to have children, you need to lose weight.
They became the unsolicited watchmen to the gates of productivity. I felt shackled to the chain gang of despair. And the White Coats made sure the chains were unbroken. I too fell for it their words , it held me hostage & I gave in to them. I believed them, drove my body to the ground, etched a burial place for my soul, I cooperated with them. I became a victim of medically-induced Stockholm Syndrome.
Over the years this scenario played over and over again. Curtain call, and I was putting on the greatest show meanwhile behind the mask my body was breaking down. Eventually the con artist would emerge again. Time for another job, this time I will make out with a lot. I can quit the daily grind and live on the success of this job. What’s this job about?
Let’s fast forward to the year 2022. It’s hard to believe this is me. I am at my sickest. After so many dismissals, and being told I’m depressed, my symptoms are somatic, a physical manifestation of unsolved trauma why, should I believe myself at myself now? And to have such an unreal disease? I still doubt myself, even though I have the validation I was been searching for. Here it is:
Secondary Mast Cell Activation Syndrome (MCAS),Ehlers-Danlos Syndrome(EDS),Postural Orthostatic Tachycardia Syndrome(POTS), Progesterone Induced Anaphylaxis, Premenstrual Dysphoric Disorder(PMDD),Fibromyalgia, Interstitial Cystitis(IC),Migraine,Esophageal Dysmotility,Traumatic Brain Injury(TBI),Right Optic Nerve Atrophy
After years of saying my symptoms were exacerbated by my period I found some who believed me. Not just one but multiple specialists. We have come to a concensus that the luteal phase of my menstrual cycle significantly contributes to mast cell degranulation which leads to a 3 fold increase in anaphylaxis 10 days before my period. And As I write this, I have had 7 days of anaphylaxis in a row. My propensity for adverse reaction in the form of anaphylaxis has made it difficult to treat my Adenomyosis and PMDD with medications. And that’s just name a few. To treat all these issues we are putting together a team to help me successful have a hysterectomy & an oophorectomy. The goal is to reduce the pain from Adenomyosis, eliminating the mood changes of Premenstrual Dysphoric Disorder. Reduce mast cell degranulation caused my body’s ill response to the increase of progesterone prior to the onset of my period. This is big!
I’m scarred from a few jobs gone. But this time it’s not going to happen. I have the best of the best on my team. The difference this time is that they believe. I am not a con artist.